Tyson Hugh Hooper

Our son, Tyson Hugh Hooper, was born with coarctation of the aorta, hypoplastic arch, and a transitional avsd. His first open heart surgery reconstructed his aorta and was on day 9 of life. His second open heart repair was not anticipated to be needed until two or three years of age. Ty had other plans. We spent the vast majority of his first 3 months of life at Vanderbilt as he went into heart failure and was diagnosed with pulmonary hypertension. As a result, the medical team concluded that he needed the repair much sooner than usually recommended, and at just shy of 3 months old Ty underwent his second life saving open heart surgery. God has already worked so many miracles in Ty's life and the life of our family and we know he is using our story. Because of this, we are grateful for Ty's special heart and feel beyond blessed that God chose us to travel this road. We ask for prayers as Ty continues to heal. We are praying for a full recovery and life without restrictions for Ty. We are praying for God to use our family and Ty for His glory.

Thank you to each and every person who supports us through prayer, giving, or just by loving on our family! We are humbled and blessed by all of the ways the Lord is providing for us and know that he is using Ty and his story to do great things!

Friday, June 19, 2015

I'm going to go out on a limb here and say that there is no feeling in the world like rocking your sweet baby knowing that you are about to send him off to the operating room where they will crack his chest and stop his heart. It's scary. You fight the what ifs and push them out of your mind as far as you can get them, but they float around at the edges. You feel a sense of urgency to soak up every moment of the squirmy, warm, sweet smelling little person that you love so much you feel like you'll pop. I guess in some ways you do pop, because the tears spill over.

This is just a tiny shred of what we felt yesterday morning. I rocked sweet Ty to sleep and looked at his perfect precious face - who would guess he was in such severe heart failure. Looking at this handsome little cutie, it was hard to believe that all this was necessary, but I know from what we have been though that he needed this surgery to get better!

So at 8AM they took him back.

At 9:30 they made the first incision.

By 11:00 they had stopped his heart and put him on bypass.

A little before 1:00 we were notified that the repair was complete and they were going to work on getting off bypass.

The entire process went much faster than Chris and I expected.

Then at 1:45 we sat with our surgeon to hear how things went. He said that he was "ecstatic" with how things went. He was confident the patch would hold, had repaired the valves and they were no longer leaking, believed his small left side would be adequate and had even found a defect no one knew about (that he's never seen himself), but didn't need to be repaired. Turns out that Ty has a valve on one of his valves... like a mini version of itself. It is fully functional and doesn't leak, so they left it alone and said it shouldn't cause problems.

It was a good 3 hours before we were able to head back to see Ty:

We have been cracking up at his tongue hanging out - that's a new one! He has been doing well so far. He actually woke up when they got him to the ICU, started wiggling and opened his eyes. They said it was because he has had all of these medicines before and knew all their tricks - so they had to up some of his doses to keep him comfortable. He still squirms and scowls if you mess with him, but he hasn't opened his eyes and if he doesn't settle himself quickly we give him morphine. It's good that he's aware enough to wiggle, but we certainly don't want him in pain.

This surgery was more invasive in terms of the heart - since the defect was in the middle of the heart, so rhythm can be an issue. Ty had pacing wires last time, but didn't have to use them. Last night he kept throwing a funny rhythm every now and then so they tried to cool him down to help. Chilly room and an ice pack on the head. He did get rid of that issue, but we still ended up needing the pacing wires and as of this morning he is on a pacer, but they are confident that it's just until he comes off a couple of the meds that slow his heart down. This is not a pace maker in his heart, but a little box that sits in his crib and is connected to the pacing wires that run to his heart for the post-op stage of recovery.

The recovery process is always a delicate balance of constant adjustments - tweaking doses of meds, getting him cooler, getting him warmer, getting his pressures up, taking his pressures down. So it was no surprise that we came back after dinner to heat lamps and blankets trying to warm him back up after trying to cool him down.

For those wondering about the blanket on his head - this is how you sleep in the dark in the ICU. lol. Every time they take it off, he won't sleep! He needs the room dark, like his mama!

These were taken this morning. He had a good night, but was "feisty" every time he had to be touched in any way.

This was the best sight this morning though:

This is the respirator - see the green line in the middle? See the purple lines within the green lines. This heart mama knew from experience what it means - I took one look at that bad boy and said, "He's breathing over the vent!" Yep - He's breathing well over the vent and this morning we will start trials to see if he can come off!

Let recovery begin.

Lord I am speechless, but you know the praises and gratitude in my heart. You also know what Ty needs and what the next few days will be like. We lean on you Lord and we praise you for where you have brought us. Thank you Father for your mercy and love and for taking care of our precious boy and allowing us to call your child our child.

6/28/15 - DISCHARGED!

Recovering at Home!

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About Me

Welcome! I am the head chef and home-maker at my address. A former teacher and current after-school program manager and a proud member of the education field (even though I still call myself a "stay-at-home mom"). I'm the member of a pretty wacky and wonderful family and a friend of some really special people. I get the privilege of being mommy to the most spectacular toddler I've ever met and the step-mom of the most kind-hearted and precious 9 year old anyone could ever meet. I'm a coach's wife (he's pretty hot and makes me laugh every day). And, most importantly, I'm a follower of Jesus Christ. This is my little blog. When I have time, I come here to share, write, document, and just to be me.